Joe's Last Chemo Day

As a part of my grieving process over the past month and a half, I have been looking back over my CaringBridge blog posts from this time last year.  I have found it helpful to revisit the events that occurred and my perspective on them because it connects me with the special times the three of us shared as a family, the challenges we faced, and the friends and family who supported us through it all. In reflecting on those things, I've slowly been able to find within myself a thankful spirit. 

Being able to find some gratitude in the midst of grief has gotten me through some rough times recently. Hurricane Sandy being one. An increasing workload another. The inevitable stress of a single mom traveling with a 2 year old yet another. There are certainly moments when I encounter overwhelming grief for the losses in my life, but somehow in the next breath, I've been able to point to one, two, or twenty things I am thankful for in spite of that loss.

Looking back over my posts from November 15 and 16 of last year was hard. As I read, I realized that it was on November 15 that Joe underwent his last cycle of chemo. When we returned for his next cycle two weeks later, he was too weak to receive it. Reading that post in particular brought back a flurry of detail. I'm pretty sure that I still have in my wallet a Panera lunch receipt from this last chemo day. It is a reminder to me of our routine at MSKCC in Basking Ridge and how we were able to be together through most of his various treatments. On chemo days, once he was settled in and getting his infusion, I would sneak away for a short time to grab lunch, usually at the Panera up the road. He would almost always be asleep with his earphones on when I returned. I would find something to do on my iPad or check out Twitter or Facebook. It may not make sense, but I cherish those incredibly mundane memories now.

In reading back over my posts from last year, I found places of gratitude. I am thankful that Joe was supported throughout his illness by his company and his co-workers and that I was allotted time from my job to care for my ill husband. Too many workers in our country do not have that and I don't take it for granted. I am thankful that Joe was able to spend lots of time with Domani and that we had reliable care for him while we were at Joe's medical appointments. All three of us benefited greatly from that stability. And, today, with the holidays and the one year anniversary of his passing both fast approaching, I am most thankful that Thanksgiving week was an "off" week from chemo for him. It ended up being a special week for us and I'm glad we were able to go through it without any medical appointments.

I'm also thankful that I was keeping a blog this time last year. It is helpful beyond words now as I piece together memories of those final weeks with Joe and use those to build a new normal for Domani and me.

Here is my post from last year:
(As a side note, Joe did have the thoracentesis done the next day and it was successful in relieving some of his breathing difficulties.)

Chemo Day

Written Nov 15, 2011 11:51pm by Anne Luck-Deak

I started this morning crawling around on the floor looking for a dropped oxycodone pill so that Domani wouldn't eventually find it and ended the day accidentally deleting a message from Joe's new home care nurse because Domani was wrecking the bedroom. Geez, this cancer stuff is much more challenging with a 1 year old running around the place! Fear not, we tracked down the pain pill (under the radiator) and properly disposed of it so there will be no hopped up baby. We will also just follow up with Joe's oncologist again and ask that the woman from care agency give us a call again. All's well that ends well.

Our visit to MSKCC in Basking Ridge today went well. Joe's platelet levels were fine and enabled him to receive his next round of chemo without delay. His chemo includes a 48-hour pump so he will be receiving it through Thursday when he will disconnect at home.

While we were there, Joe also received some fluids because he was a bit dehydrated and some oxygen because he again has some fluid in his right lung. He is now scheduled for a thoracentesis at Overlook Hospital tomorrow at 10:00am. This is the same procedure he has had previously, but the one X-factor will be whether his blood is clotting well enough to prevent the need for a plasma infusion. If a plasma infusion is needed it may delay the procedure to the point that it might not be done tomorrow.

He does need the relief so we hope that all will go forward as planned tomorrow and they will be able to perform the drain on his lung. He has experienced a slight improvement in his appetite over the last several days so we hope that as his chemo treatments continue that will also continue.

The best news? Next week will be an "off" week from chemo so we will be free to enjoy the holiday and be thankful for the time with family.

Strength & Love - Living the Fall

I've spent a decent amount of time these past few weeks thinking back over life this time last year. For me, that has involved revisiting both my personal journal and the CaringBridge site I maintained for friends and family during the last two months of Joe's illness. I am now more thankful than ever that I was finally able to convince Joe in October of last year to let me to start the blog on CaringBridge because looking back on it is very meaningful. Joe was always relatively private about what was going on with him to the point that even some of his close friends and family members didn't realize exactly how serious his illness had gotten by the time the fall season was in full swing. Part of my hope in integrating these posts with my current blog is not so much to recall the difficulties of last fall, but to really remember the sweet moments, those times when even in the midst of pain, love was shining through in our lives.

I have found looking back on these blog posts to be a cathartic part of my grief journey because they are a way to remember Joe and how much strength and love he showed throughout his illness. Those things about him continue to be a model for me in my own life. It's so easy to lose perspective and call this my WORST day or complain about how EXHAUSTED I am or get ANGRY about the traffic or an issue at work. Revisiting these posts reminds me to re-focus on strength and love. So, I've decided to share some of these posts that had previously only been available on our protected CaringBridge site. I don't think I will necessarily share them all, but as I walk through this fall season which will inevitably lead to the cold winter and the one year mark of losing my Superman, I know I will somehow find comfort in walking through this season "with Joe".

Superman

Written Oct 13, 2011 3:12pm by Anne Luck-Deak

Many times over the past year and a half I have told Joe that he is my Superman and I think there is no time that has been more true than these past few weeks. After powering through intense radiation on his spine, he had surgery this past Tuesday to deal with the accumulating fluid in his lung. In the end, more than 2 liters of fluid was drained both through the surgery and using the catheter that was placed. (Imagine, a 2 liter bottle of soda - that's a LOT!) It's no wonder that he is now breathing easier!

In the midst of it all, we celebrated a very HAPPY 1ST BIRTHDAY with our little man and enjoyed all the love and support from family and friends. Domani enjoyed his birthday cupcake on Tuesday although he seemed more interested in eating his party hat (he'll learn)! The time has just gone by so quickly and we are looking forward to celebrating with the whole family this Saturday.

Joe started back with his chemo treatments today after a long hiatus for his radiation. Here's to hoping that this helps him find relief for some of his symptoms and that he is able to fully enjoy the party on Saturday.

Hurry Up and Wait

Written Oct 15, 2011 1:40am by Anne Luck-Deak

On Thursday, Joe resumed his maintenance chemo with the hope that it will get him back on track after a month and half with no chemo treatments while he received radiation to his spine. He is tired and still experiencing some side effects from being off the maintenance chemo for so long, but we are hopeful this will start to get the tumors back under control. We will just have to wait and see.

Thanks for all your support over this past week especially - it has not been an easy one for us. What a blessing though that in the midst of a tough week like this we were able to celebrate the birthday of our own little miracle. Domani is growing up so fast and we treasure every moment we get to spend with him. Extra hugs to you all today!

Happy Birthday, Domani

Written Oct 17, 2011 12:35am by Anne Luck-Deak

Well, it finally feels official. Now that we have celebrated Domani's first birthday with a proper party it finally feels like he is REALLY one! 

What a blessing it was to be surrounded by family and friends, to watch Domani running around the firehouse shrieking with his cousins and friends, and to even have Naomi join us via Skype! Domani is a bit slow on the unwrapping so we still have some unopened presents for him to get through, but it's just a way for his celebration to last even longer! We are truly overwhelmed by the generosity shown to Domani and to us.

While the party was a lot of fun it was also exhausting (for all 3 of us!) We have spent most of the time since then resting and enjoying some leftover goodies.

While Joe's appetite is still not great and he is experiencing some pain, Domani's birthday celebration went a long way towards lifting our spirits. We are so thankful for our little man and the joy he brings to our lives.

Looking back on these posts, I am reminded why I got my Superman tattoo back in March. I am also reminded of Joe's sheer joy at being able to be with his son at his 1st birthday party and that Domani's party was the last time Joe drove himself anywhere alone. And I laugh at the fact that just like last year, Domani still has a stack of birthday presents to open several days after his party. I remember our optimism that somehow this next chemo treatment would turn the tide in the cancer battle and buy Joe some more time with us. I remember the happiness of Domani's birthday celebration and how blessed I felt and I remember how completely and totally tired we were when it was all over.

I missed Joe incredibly when we celebrated Domani's birthday this past Saturday. It was a lovely day and I just know he would have had a blast following our 2 year old around and showing him all there was to do at Von Thun's Farm. Joe would have had so much fun with Domani and his cousins and there were quite a few moments when that realization took over my thoughts and emotions. For me though, the moment when I missed him the most that day was back at home, during the afternoon family nap time that followed the party. Because this year, Joe's nap couch was empty and that still has a sneaky way of yanking on my heart strings.